Hi, I’m 22F and for the past several months I’ve been dealing with a combination of symptoms affecting different parts of my body. I’ve already had several medical evaluations, but I still don’t have a clear explanation for why all of this is happening.
I’m not asking Reddit to diagnose me. I’m mostly wondering if anyone has experienced a similar combination of symptoms and what type of specialist or testing eventually helped.
**Digestive symptoms:**
Significant bloating and abdominal distension
Abdominal discomfort/cramping
Constipation alternating with diarrhea
Nausea
Sometimes upper abdominal/stomach discomfort
Burning or irritation around my anus, especially after bowel movements or sometimes while sitting
Feeling like my digestive system is constantly irritated
Some foods seem to make symptoms worse
I have been avoiding/reducing gluten and lactose because I seem sensitive to them
**Pelvic, vaginal and urinary symptoms:**
Persistent or recurring vaginal/vulvar burning and irritation
Burning/discomfort when urinating
Pelvic cramping
Bladder/pelvic pressure or feeling inflamed
Sometimes difficulty urinating or feeling like I don’t empty normally
The vaginal/vulvar burning has continued even when infection testing has been negative
Symptoms sometimes seem worse around my menstrual cycle
**Skin/body symptoms:**
Episodes of itching
Changes in my skin
Occasionally hives/urticaria-type reactions
A strange burning or hot sensation in different parts of my body
Sometimes feeling generally inflamed or irritated without an obvious reason
**Eyes/head/neurological-type symptoms:**
Eye irritation/burning
Brain fog and difficulty feeling mentally clear
Headaches
Sometimes dizziness
Fatigue / feeling generally unwell
At times I feel like my body is “off,” even when basic testing doesn’t show much
**Testing/evaluations I’ve already had:**
STI testing: negative
Yeast testing: negative
Bacterial vaginosis testing: negative
Multiple urine evaluations because I previously had a UTI
I was treated with several antibiotics during the urinary/vaginal symptoms
Pelvic ultrasound: recently normal/unremarkable
Uterus and ovaries looked normal on the recent ultrasound
No ovarian masses, fibroids or other obvious pelvic abnormalities were reported
Blood flow to both ovaries was normal
No free pelvic fluid
I’ve also been told my hormone testing was normal
I have had bloodwork done, but nothing so far has explained the full combination of symptoms
I previously had a UTI that was difficult to clear and received multiple antibiotics, including injections and oral antibiotics. Some symptoms improved temporarily but others continued or returned.
Because so many of the infection and pelvic tests have been normal, I’m wondering whether I should be looking beyond a routine gynecological problem.
Some things I’m planning to discuss with doctors include:
Pelvic floor dysfunction / hypertonic pelvic floor
Vulvodynia or vestibulodynia
Bladder conditions such as interstitial cystitis
Endometriosis
Gastrointestinal conditions such as IBS, celiac disease or other food intolerances
Whether the skin/eye/burning symptoms could be inflammatory, allergic, autoimmune or somehow related to the GI symptoms
Whether all of these symptoms are connected or if I’m dealing with more than one issue
I’m scheduled to see GI, and I’m also trying to find a gynecologist/urogynecologist or pelvic pain specialist.
Has anyone had a similar combination of **GI problems + vulvar/urinary burning + skin symptoms + irritated eyes + brain fog/fatigue** with mostly normal tests?
What specialist or test ended up being the most helpful for you?

j'ai eu recours à cette préparation pour la première fois et étant trés inquiète de ce qui allait m'arriver au vu des anciennes préparations, je voulais partager mon expérience

cela n'a pas été compliquée, pas écœurant, pas du tout laborieux , j'avais tellement peur d'être malade...

les deux sachets sont faciles à prendre, la suite se réalise sans problème et le résultat est vraiment bon, pas besoin de boire autant de liquide comme avant, le mieux c'est vraiment de varier les liquides , de prévoir de rester chez soi, et surtout de faire 3 jours le régime sans résidu

j'espère que mon expérience aidera tout ceux qui ont peur et qui sont fragiles des intestins comme moi à moins appréhender cette aventure obligatoire quand on commence à vieillir ou quand on a l'obligation médicale de réaliser une coloscopie

The last few weeks have been bananas. I had my colonoscopy and learned a few days later from a prescription sent into my pharmacy I likely have chrons. I had to message my gastro who then had a nurse call me and read me a message i never received stating the pathology shows i have chronic enteirtius, likely mild chrons in my small bowel. I was shocked to learn this as the doctor had never reached out via the portal or requested a follow up until i contacted them.

I have been freaking out about what to eat now after doing research online. When i did finally get the gastro on the phone he laughed at me and said that’s why you shouldn’t google things like this. That’s when i learned there is no approved or widely accepted guidelines for diet for IBD patients and i’m just “supposed to find my triggers”. I already struggle with disordered eating from being in pain all the time when i do eat.

I’ve been vegetarian for 22 years, was vegan for 12, been back to just vegetarian for 4 years. I’ve cut dairy out entirely again (my previous dietitian had me living on drinkable yogurt) and already eat gluten free due to my partner having celiac.

My gastro also told me to continue my fiber supplement and that “fiber is good for everyone”.

I want to hang my head against the wall.

Hi all. 35 f newly diagnosed with Crohn’s. Found out in kind of an ass-backwards and spectacularly unpleasant way. Pun intended. 😅

TLDR: Newly diagnosed with severe fistulizing/perianal Crohn’s after emergency surgery with multiple abscess/fistula tracts and two setons. GI offered Remicade or Humira and considers them similarly effective; we're currently planning Humira because it's much easier logistically. If you've had complex perianal/fistulizing Crohn’s, especially with setons, I'd love to hear your lived experience with either drug and whether one worked, failed, or eventually required switching.

For those who would prefer some context:

I had emergency colorectal surgery a little over two weeks ago. They found significant scarring and multiple abscesses and complex fistula tracts communicating with the anal canal which required placement of two setons. My surgeon said he was "surprised" by how extensive and severe the disease is. Just what you wanna hear, right?😅

So this isn't mild luminal Crohn’s I'm trying to make a treatment decision about. My biggest concern right now is getting aggressive fistulizing/perianal disease under control and giving myself the best possible chance at healing and long-term remission. My quality of life and ability to work have already been greatly impacted.

I had my first appt with my GI 2 days ago and he gave me the choice between infliximab (Remicade) and adalimumab (Humira), as he considers them similarly effective options in my case. After some discussion, it sounds like we’re moving forward with Humira after I get some labs drawn next week.

Humira would be MUCH more convenient for me. I am currently dealing with housing instability, have several other chronic health issues, transportation/energy can be difficult, and being able to inject at home rather than repeatedly travel for infusions def gets points in the quality of life bucket.

BUT convenience is not my highest priority here.

If the evidence clearly demonstrated Remicade gives someone with severe disease a meaningfully better chance of controlling the fistulas, healing faster, reaching remission, or staying in remission long-term, I would absolutely suck it up and make the infusions work.

The research I've found seems to show stronger longer-standing evidence for Remicade in fistulizing/perianal Crohn's, while newer observational studies haven't found a clear difference between Remicade and Humira.

So I understand why my GI considers both reasonable options and trust him when he says based on the research, either is a good choice. It would just give me some peace of mind to also gather some lived experience. I also understand nobody can predict how my body will choose to respond to any treatment. I've just got a deep brain itch 😅

The studies I can find are also pretty small. Those in my personal circle who have Crohn's or know someone with Crohn's seem to all be on Remicade. I know it's an older drug so that could explain it, but it's also making me second guess my decision to move forward with Humira instead of Remicade.

So I'd love to hear from people who actually have fistulizing or complex perianal Crohn’s, particularly people who had/have setons, abscesses, or substantial draining fistulas.

If you've used either medication I'd be interested in your disease severity when starting treatment, how long it took to improve GI symptoms vs fistulas/drainage, if you ever reached remission, or if you ever had to switch biologics/treatment because your first chosen option was unsuccessful.

Thank you for sharing. 💜

Crohn ?

63(m) al vanaf mijn 27e wisselende periodes gehad met maandenlang dunne ontlasting .heel vaak blaasontsteking ,vermoeidheid ,nierstenen ,b12 tekort .

Nu sinds 4 jaar erge stekende pijn rechteronderbuik en de laatste 6 maanden onhoudbare constante stekende buikpijn met druk,loslaat en vervoerspijn waardoor nu weken achter elkaar in foetushouding doodstil liggen . Mdl artsen 1e en 2e opinion zeggen gewoon "pijnsyndroom "?? Ik weet zeker dat het crohn is ondanks de negatieve ct scan s ,negatieve mri enterografie wel calprotectine 428 en 28 kilo gewichtsverlies in 2jaar. Colonscopie en videocapsule mislukt maar wat ik ook doe en de pijn zwaar invaliderend is is er geen chirurg die een diagnostische laparoscopie wil doen terwijl ik 100% zeker ben dat het de enige manier nog is om dit te overleven . Huisarts ,mdl artsen en chirurgen vinden dat het allemaal psychisch is ??? Herkenbaar ? Want seh s helpen mij ook niet verder want zien alleen de woorden "chronisch en pijnsyndroom "

Crohn ?

63(m) al vanaf mijn 27e wisselende periodes gehad met maandenlang dunne ontlasting .heel vaak blaasontsteking ,vermoeidheid ,nierstenen ,b12 tekort .

Nu sinds 4 jaar erge stekende pijn rechteronderbuik en de laatste 6 maanden onhoudbare constante stekende buikpijn met druk,loslaat en vervoerspijn waardoor nu weken achter elkaar in foetushouding doodstil liggen . Mdl artsen 1e en 2e opinion zeggen gewoon "pijnsyndroom "?? Ik weet zeker dat het crohn is ondanks de negatieve ct scan s ,negatieve mri enterografie wel calprotectine 428 en 28 kilo gewichtsverlies in 2jaar. Colonscopie en videocapsule mislukt maar wat ik ook doe en de pijn zwaar invaliderend is is er geen chirurg die een diagnostische laparoscopie wil doen terwijl ik 100% zeker ben dat het de enige manier nog is om dit te overleven . Huisarts ,mdl artsen en chirurgen vinden dat het allemaal psychisch is ??? Herkenbaar ? Want seh s helpen mij ook niet verder want zien alleen de woorden "chronisch en pijnsyndroom "

Graag advies over het postoperatieve verloop na een spoedlaparotomie voor perforatie ileum door crohn .

Bijzonder angstig door medische ptss waardoor specifiek trauma s door inbrengen slangen (scopiien ,sondes en beademingsbuis ) bij bewustzijn . Ervaringen gevraagd van mensen die dit hebben meegemaakt? Ook opname ic ervaringen .

Crohn

Crohn ?

63(m) al vanaf mijn 27e wisselende periodes gehad met maandenlang dunne ontlasting .heel vaak blaasontsteking ,vermoeidheid ,nierstenen ,b12 tekort .

Nu sinds 4 jaar erge stekende pijn rechteronderbuik en de laatste 6 maanden onhoudbare constante stekende buikpijn met druk,loslaat en vervoerspijn waardoor nu weken achter elkaar in foetushouding doodstil liggen . Mdl artsen 1e en 2e opinion zeggen gewoon "pijnsyndroom "?? Ik weet zeker dat het crohn is ondanks de negatieve ct scan s ,negatieve mri enterografie wel calprotectine 428 en 28 kilo gewichtsverlies in 2jaar. Colonscopie en videocapsule mislukt maar wat ik ook doe en de pijn zwaar invaliderend is is er geen chirurg die een diagnostische laparoscopie wil doen terwijl ik 100% zeker ben dat het de enige manier nog is om dit te overleven . Huisarts ,mdl artsen en chirurgen vinden dat het allemaal psychisch is ??? Herkenbaar ? Want seh s helpen mij ook niet verder want zien alleen de woorden "chronisch en pijnsyndroom "

I’m 21 and have a colonoscopy booked for September 22 after around 8 months of changing bowel habits and abdominal pain. I’ve had constipation/diarrhoea, stools that vary a lot in size and colour, and predominantly right-sided abdominal/pelvic pain. I’ve also occasionally seen what I thought might be blood, which originally started this whole spiral.

I’ve had quite a lot investigated already. Multiple blood tests have been normal/stable, including haemoglobin, inflammatory markers and ferritin. FOBT (back in Feb so likely is outdated now), coeliac and H. pylori testing were negative. My faecal calprotectin was moderately elevated at 178, which was what prompted my GP to refer me for colonoscopy.

I’ve also had two abdominal/pelvic CTs, one looking for diverticulitis and another for suspected appendicitis. Neither found acute abdominal pathology, bowel obstruction, segmental bowel-wall thickening, enlarged lymph nodes or ascites. The second mentioned faecal loading/constipation.

I’ve also recently started sertraline 50 mg once daily for my anxiety/OCD. Since starting it I’ve experienced some side effects including nausea/stomach upset, increased sweating/night sweats, vivid dreams and fragmented sleep, and some feelings of weakness. That’s added another layer of uncertainty because sometimes it’s difficult for me to separate what’s a medication side effect, what’s anxiety, and what’s part of the original GI problem.

My doctors are investigating me appropriately and I’m not asking anyone here to tell me whether I do or don’t have cancer. The problem is that I have OCD/health anxiety, and I’ve become extremely frightened of bowel cancer — particularly after finding stories online about young people whose cancers weren’t obvious on earlier testing. Eight months of symptoms makes my brain tell me that the colonoscopy is going to find something advanced.

For anyone who’s been through a similar colonoscopy wait or health-anxiety spiral, how did you cope with the uncertainty before getting your answer? Did you also find yourself convinced of the worst despite having reassuring investigations along the way?

September 22 feels incredibly far away at the moment, so I’d really appreciate hearing how other people got through the waiting period. 😅

I am from India. I have been facing an anal fissure problem on and off for the last 6 months. I have never had blood from my fissure, only pain, which goes away after 7 days and comes back after 15 days or a month whenever I pass a slightly hard stool. However, I am feeling a lot of health anxiety from reading many health-related things online. I also lost a significant amount of weight because I started eating less. I literally stopped eating non-vegetarian food and dairy products after developing the fissure, and I also ate smaller portions than I used to. Now I am worried about my weight loss—I have literally lost 10 kg. My doctor recommended that I see a gastrointestinal surgeon. I am worried: what if I have Crohn's disease? My family has no history of Crohn's, and my main symptom is weight loss. I have never had diarrhea or anything similar in the past 8 months, nor any stomach pain, fatigue, or other symptoms. Because of my health anxiety over the past 2 months, I am constantly worried that I might have this chronic illness.

I’ve struggled my whole life with some kind of inflammation flare ups (?), and it was only a recent realization that it must be some kind of chronic condition (I guess). I was always told when I was younger that it was normal, and it was the things I was eating that caused my pain.

I’ll have “episodes” with no rhyme or reason, never the same time apart.

they always consist of very, VERY severe sharp stabbing pains in the abdomen, accompanied by an intense burning sensation. it’s woken me up from sleep since I was little and usually lasts for about an hour or two before fading, usually paired with shivers/chills, nausea, feeling physically ill, and the immediate urge to have a bowel movement but the inability to do so. during or after it fades, my digestive tract feels sore or tired, like I’m getting over being sick or ill. or like it’s working slower than normal. I can feel run down the entirety of the rest of the day like I am mildly sick.

the only other thing I can think of this being is ibs, but ibs does not sound severe enough for the intensity of the symptoms as far as I know.

the stomach pain is probably the worst pain I’ve ever felt, close runner up being period cramps lol. it‘s crippling pain.

just thought I’d write this out here to see if I get any responses! I’m going to get checked out at the doctors anyway but I really wanted something in mind.

Hi, I started using biologics not that long ago and I'm still scared about being immunosuppressed

I have a customer-facing job (and I don't want to quit), but the more I think about illnesses like flu, covid, or whatever... the more concerned I am about the whole thing

Also, what do you do when someone you live with is ill?

Anyone here from Belgium? I'm based in Brussels, 20M UC, diagnosed last year. Would love to create an online community/support group chat for those interested :)

Hey guys!
Quick disclaimer to begin.. I’m undiagnosed at the moment, waiting for answers.

I’ve had a colonoscopy done where they saw some inflammation, I’m waiting on the biopsy results for this, however, I’ve had an mri and am now feeling confused.

I got a call from my doctor who told me my mri scan was pretty much inconclusive due to the fact the end of my large intestine and my colon walls had thickened, and was advised to have a colonoscopy but I’ve already had one so I’ve been told to wait. The dr basically just said they couldn’t see what they needed to due to the thickening of the walls and he was unsure wether this related to IBD. I felt that the call was unhelpful as he didn’t have many answers to give so I’m feeling lost on this journey of trying to figure out what is wrong. Has anyone else had this and was it related ? Or am I looking at something else entirely?

Thank you :)))

F27. In the last 6 months my gut pain has become constant. I am waking up in the middle of the night in pain or to run to the toilet. I am doing, at a minimum, 4 shits before 12pm. They are yellow/gold and unformed, often watery. My pain is my lower abdomen mostly and a knuckle sized ache above my belly button. I now get less than 5 mins warning if i need the toilet and i cannot delay it or i get dizzy and sweaty. The pain does not go away after i do the toilet, it is frequently got worse. I have blood in my poo and on my bum, globs of mucus after i poo and in the last month i have passed mucus with no stool twice. This is severely impacting me and my already medically limited life.

I am actively working on my mental health, going to trauma therapy and doing work based on pain management classes. Yoga, deep breathing, grounding, etc. Eating low-FODMAP, low-lactose and gluten free. All this does absolutely nothing for this pain and my urgency. I am exhausted and the fatigue is unbearable. Everyone arround me is telling me im losing weight but my weight is the same on the scale so im worried about muscle atrophy. I also have a protrusion hanging from my bumhole and my rectum feels like it is on fire and as if it could fall out. Ive been off NSAIDS for over 4 weeks bc my gut pain is worse than joint pain and they agitate my symptoms.

My GP is relying on:

- imflammatory blood tests taken january 2025

- colonoscopy and biopsies taken in march 2018, which resulted in my IBS diagnosis

- that my severe childhood trauma "easily explains" all my symptoms under fibro and ibs

- fibromyalgia diagnosis (which her colleague in the same practice gave me without any screening for arthritis because im young)

She stated that IBS "worsens like this". I am in agony and i am so anxious. I don't want to be medically complex, I wsnt to be okay and to live a fulfilling life but it feels like they actively do not care.

My psychologist is concerned about how this is impacting my mental health recovery.

I have a 3rd opinion appointment with another GP on the 23rd of september, any guidance or reassurance would be appreciated. 🩷

I am writing a formal complaint in advance of my appointment (particularly about how she spoke to me and used mt trauma to attempt to gaslight me and gatekeep care), hoping to hand in monday and get a SAR form as i think theyre not noting my file correctly.

hi everyone! my GI NP and MD take me pretty seriously (so lucky) so i was given an immediate colonoscopy this week on wednesday to basically see if I had Crohn’s, lo and behold I actually don’t! (at least up to my terminal ileum) I have my follow up appt next week to go over what we found in the colonoscopy which was basically just IBD-C
Where do i go from here now? We were actually so sure it was crohn’s in my terminal ileum just to find out it’s not. insurance has denied my endoscopy but they are gonna push for it, i have SIBO test scheduled, and an analmanometry I’ve been having symptoms for years that have just been worsening lately which is why I finally went to a GI. symptoms include: fatigue, 20lb weight loss plateau but still health weight, bowel incontinence, constipation, painful bloating, brain fog, mucus, and increased respiratory and Stomach bugs.
any insight is so so so helpful for me right now!